A Woman's Journey With Rare Disease

Life-Hacking Oxygen (Part 2)

In my last post I mentioned I had to wait for a portable concentrator. I thankfully had a lot of help in researching & deciding on one too, although part of the decision was based on what my oxygen supplier stocked. There is a wait list since these are somewhat personalized machines, it depends on how much oxygen one uses and if the person need intermittent (pulse-dosing) or continuous & high pulse. There are many to choose from but it’s a completely individual choice depending on what it’s use is, what the battery life is, & what the flow settings are.

For those who don’t know, a portable concentrator is a battery-powered machine that allows someone to get their oxygen similar to the bottles, but can run much longer because of battery power. Many of them now also have AC adapters & car chargers so they can be recharged anywhere to get even more life out of it. It runs just like the heavier oxygen machines that were used in the past but allows someone to be mobile, & also to not have to worry about storing extra tanks or running out of oxygen. It also is able to be taken places where regular oxygen bottles can’t be (like on airplanes). The issue with most of these is that they are costly. If someone needs continuous oxygen they will require a much larger concentrator that is put on a cart versus carried on the back because the continuous needs a stronger compressor. It also needs to run all the time versus intermittently based on your inhalations (breathing). Out of pocket these can cost anywhere from $1500 used to upwards of 3-5K depending on the type of machine. Based on my demands & what my supplier stocked I chose the Lifechoice Activox 4L (the latest model). This machine runs relatively quiet & gives me anywhere from 1-4 liters on pulse dosing depending on what I need. It can run at least 8 hours on just one external & the internal battery combined if I keep it at 2 liters. I also opted to get an extra battery for travel or for switching out for trips or places where I wasn’t sure I could charge that often or in case one suddenly fails. It paid off. I’m lucky in that my insurance covers most of the cost for the machine & the battery that came with it.

The main problem I had was again the bag I was given to tote this around. (I affectionately refer to it as my jet pack because I do look like I’m going to blast off to the moon when I have it on.) I understand why the manufacturer designed the bag the way they did, but despite numerous attempts I just couldn’t get comfortable with it. They have two straps that can be crossed into wearing for a backpack, or it can be used with one strap to carry over the shoulder or cross-body wear. It also has a detachable handle that can be put on so it can be carried like a brief case. It’s designed in a camera bag format with side pockets for carrying extra batteries. It’s smart, but I hated it.

Here’s why…
1. The backpack design does not work for me at all, nor did the cross-body. No matter how much I adjusted the straps kept slipping. I like wearing the concentrator tight against my back, especially when I do active things like Improv. It felt way too heavy when I tried just wearing it cross body. It also got twisted up since I typically wear a cross-body purse. Even with the shoulder strap on my shoulder I felt weighted down.

2. They should have made separate straps just for a backpack. The straps were designed for cross-body & backpack wear both. That’s why the straps have loops. Invariably this caused me issues time & time again again when I put it on. My tubing got caught in between or tangled in the loop, or my arm was locked in a funny position when trying to get it on. It’s not klutz-proof.

3. It’s rugged. Which granted is nice, but it makes it heavier. With my 2 batteries I am carrying around at least a pound for each battery (2 pounds), 4-5 for the concentrator, & I’m sure at least 1 pound for the bag itself (though I have not weighed it). When you have crappy lung function it’s ironic that your upper body is automatically weaker & seems to decondition a lot faster in spite of what I have tried to do to build it up. That extra weight makes a difference. I can attest to this too because I tend to desaturate now carrying things too. I need an extra liter to carry a laundry basket. So imagine me with a laundry basket, my jet pack going upstairs (which also causes me to drop), at times it felt like I was trying to scale Everest even though it seems like it should be so simple.

4. It’s ugly. While it is designed to look less medical because it’s supposed to look like a camera bag, it’s brown and black & looks a bit old-fogey looking. I know most people don’t care about that, but we as women (& men) get to choose what kind of handbag/purse/wallet/backpack to carry around. Why can’t they at least offer one or two other colors, even if they have to charge extra? Why assume that everyone on oxygen is older? There are many illnesses, (like cystic fibrosis for one) that have young people & even children needing to use oxygen. It would also be nice to have a masculine or feminine bag that’s sleek that looks somewhat business-oriented too because there are professionals who work & use supplemental 02.

Well, I life-hacked this dilemma too. I was goofing around on Etsy one day & found this wonderful store. The woman who created it, Yvonne Humphries, was inspired to create these bags by hand after making one for a relative as a gift. She takes pride in her work & painstakingly crafts these bags by hand. If the concentrator is a common one, someone can pick a bag from her store. If they are not sure or want a specific style or design, they can submit a custom order. They just send her the dimensions & pictures of the concentrator. She does do the backpack style but charges extra (probably because it takes additional fabric & time). It is pricey, but in this case every year I file taxes & get a refund I set aside a small amount for something that I might not otherwise get on my own. I decided this year to get this oxygen bag after feeling completely frustrated by the manufacturer bag.

I also had another reason. I was promoted at my job recently & needed to do some traveling. I hesitated using my oxygen on client visits for the first few times because I didn’t want people to be distracted or see just that or make any presumptions about me or my company based on appearance. Maybe that’s selfish but it was a real fear. Especially working in health insurance. I thought too, that this bag would be a bit more stylish & less intimidating. I figured too that it might be a good icebreaker in case I did have to use the oxygen more regularly & on visits.

I’m glad I did this. I did opt to pay extra for the backpack straps but they are real adjustable backpack straps. I’m happy & comfortable because this bag wears the way I need it to. It is also more lightweight & comfortable. My shoulders & back don’t ache even if I wear it for hours at a time. It is also very cute. It has the vents in all the places my manufacturer bag had too, plus some more pockets so I can feel comfortable that the concentrator will not overheat in it and will receive adequate ventilation. I can keep my handicap permit, a pulse oximeter, & a few other extra things in there in addition to having the pocket on this one that was similar to the manufacturer bag to tote my extra battery.

Here’s the link to Yvonne’s Etsy Store (AmariJade is the name if you want to look it up by the store name to add to your favorites). She has several patterns to choose from & also makes bags for oxygen bottles too. She is a super sweet person who will really work with her customers to ensure they are satisfied with their purchase. Mine took a while (about a month & half) but it was worth the wait. I know it will hold up for a long time.